Sidebar: Guillain Barre Syndrome

Just wanted to make sure that if someone did a google search for my blog that it would hit on some items and some things about me that make for some interesting reading.

About 9 years ago I had Guillian Barre Syndrome, it's a really long story here is a link to an article detailing what happens with the syndrome. http://www.ninds.nih.gov/disorders/gbs/gbs.htm

My case it started with tingling in my feet and ended up with me in ICU having to have immuniglobin therapy so I could walk again, followed by a month or so of physical therapy. I was in the hospital a total of 27 days going from riding my bike to not being able to lift a cup of water was dammed scary. While I was in the hospital the first couple weeks I couldn't stand up, lift my arms/legs, feel my fingers/toes, was a crazy and very scary thing. The illness effects are paralysis, starting in extremities and moving into the chest, face, possibly lungs, so it can certainly get to be more severe than my case, I never had to go on the ventilator and had respitory therapists working with me while I was in the hospital to help. I understand that my being young and catching it early helped a great deal from having more lingering effects.

The odds of it coming back are very slim and if it did, the effects would likely be no where near the original lapse of it. I think i get tired more easily because of it still but that isn't a medical fact. There are some older people who get this illness and die from it due to the fact that it effects the muscles that contract and expand the lungs. When I was in ICU they told me that as they wheeled a ventilator into my room in case that happened. As you can tell if you know me or if you read my blog I have been walking/jogging/etc. My balance isn't perfect but typically I can jog without tripping over myself. If anyone wants to help the cause please give to the Guillian Barre Foundation http://gbs-cidp.org/ They are a great educational and support resource for this illness.

I know when I had this syndrome I was REALLY depressed a great deal not knowing what the future held and the folks at the hospital offered to have a past GBS patient come in and speak with me to reassure me that things would be alright, and that never materialized, so if you know someone who has this illness and has questions for someone who has been there please feel free to pass along my email address or email me their phone number/hospital info and I will be glad to give them a call or if they are in the Pittsburgh area, stop in and visit.